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Fellow Migraine Sufferers - Advice Please. My life is feeling pointless

119 replies

Horrace · 19/11/2024 10:59

I've suffered from migraines for the past 6 years. I'm 52, periods almost stopped. No menopausal symptoms really other than memory loss but that could be stress.
The past year I seem to get a migraine every Friday and it lasts 3 days. I can't get out of bed due to the pain.

Over the years I've tried the following:
Amitriptyline
Naratriptan
Sumatriptan
Cyclizine for sickness

I've had and MRI all good.
Currently I take
Topirimate
Zolmitriptan nasal spray
Buccastem for sickness

I work Mon to Fri. Then I end up in bed all wknd. I have no life. I can't plan anything. I can't go out with friends. I need to care for my parents but that's difficult as I'm too sick to leave the house.

I'm sick of going to the GP. I went private, hence the MRI and latest change of meds. But it's getting worse.
Has anyone had any success stories?

OP posts:
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myladyjane · 22/11/2024 22:26

I take magnesium and coQ10 which has helped mine immensely. Not as bad as yours but stress/hormone driven I think and I've gone from 2-3 clusters a month to 2 in total in 6 months.

There are some good studies on Q10 and it's cheap with minimal downsides from what I could read. Possibly worth a try whilst you are exploring other options?

Mel2023 · 22/11/2024 22:06

I don’t have them as frequently as you OP, and if I did I’d be feeling just the same as you do. Migraines are awful and so much more than just a headache! I’ve tried so many medications over the years - including Sumatriptan, Narutriptan and Zolmatriptan - but the only one which takes the edge off is Rizatriptan. It dissolves on your tongue and honestly it’s halved the length of my migraines from 12+ to 6 hours. I do still feel rotten with the migraine still - symptoms haven’t changed - but I’ve found that it helps me sleep through it (without medication I can’t sleep no matter how hard I try and so have to experience the whole thing) and lessens the “migraine hangover” afterwards.

Have you done food intolerance tests? I recently did a private one through a pharmacy as I found I was getting more frequent migraines and my eczema was worse - I’m 93% dairy intolerant! Cut it out and while I'm still getting my usual hormonal migraines the ones which were popping up out the blue with no triggers have lessened (I hope - it’s early days!).

Also, sounds obvious but are you finding yourself knackered and run down at the end of the working week on a Friday? I always find my migraines hit evenings and weekend usually - when I’m at my most tired and run down. Fridays are the end of the working week, so if you’re in a particularly stressful job etc it could hit you as come to the end of the week?

Hope you get sorted OP!

TigerRag · 22/11/2024 15:17

FishFlaked · 22/11/2024 07:31

just woke up to day 2 of mine. Not sure what to do. So painful. One sided head face and neck. I take beta blockers already and calcium channel blockers for other things. Just really want to understand what triggers these so I can work it out. Get well soon to everyone else suffering.

Have you used the migraine buddy app?

FishFlaked · 22/11/2024 07:31

just woke up to day 2 of mine. Not sure what to do. So painful. One sided head face and neck. I take beta blockers already and calcium channel blockers for other things. Just really want to understand what triggers these so I can work it out. Get well soon to everyone else suffering.

Goatblu · 20/11/2024 18:36

VegTrug · 20/11/2024 00:21

I get visual disturbances before a migraine and intense nausea. I'm on Ondansetron for nausea (life changing!!) and was on other meds for the migraines until I discovered putting my feet in hot water whenever I get any headache! It pulls your blood away from your upper extremities and results in almost instantaneous relief. Just amazing

I'm off to try the hot water thing. Woke at 3am with a migraine and I haven't been able to sleep since.

JurassicPark4Eva · 20/11/2024 13:36

LazyArsedMagician · 20/11/2024 12:55

my niece has had a daith piercing in her ear to stop migraines and she swears it had worked

I also have one and it's done nothing, it's basically acupuncture until it heals. If you're more susceptible to alternative methods it might work for you though I wouldn't hang my hat on it!

I have both pierced, still chronic migraine. Made not a jot of difference, but I like piercings so they look good!

TheFairyCaravan · 20/11/2024 13:33

I get a lot of migraines. In lockdown I contacted the National Migraine Centre because I’d had enough, due to being peri-menopausal, the migraines ramping up and being told I couldn’t have HRT. They told me I absolutely could have HRT and went through everything I needed to do and what I should cut out.

They recommended a supplement called Dolovent, it’s got magnesium, riboflavin and CoQ10 in. I, also, take a BioKult probiotic for migraines. She told me to take 900mg and 1g of paracetamol dissolved in a glass of full sugar coke at the first sign of a migraine. I find that works quite well, it’s weird because i can’t drink coke at any other time because it brings migraines on.

I already take 200mg of Topiramate daily, and amitriptyline for other pains. I can’t take anything opiate based because they bring on migraines. I take a beta-blocker called Bisoprolol because I have a fast heart rate which, also, helps the migraines.

I have Botox on the NHS. I’ve been having that for over 10yrs but you have to have 15migraines a month. I also pay for acupuncture privately which helps a hell of a lot. I started having it years ago but dropped it off because we moved house, so after a while I really noticed a difference. I go once a month now and while I still get migraines they’re much less painful, less frequent, don’t last as long and I don’t feel so sickly.

I do have a fairly restrictive diet because a lot of things set off my migraines which is a pita.

LazyArsedMagician · 20/11/2024 12:55

my niece has had a daith piercing in her ear to stop migraines and she swears it had worked

I also have one and it's done nothing, it's basically acupuncture until it heals. If you're more susceptible to alternative methods it might work for you though I wouldn't hang my hat on it!

Bluejacket · 20/11/2024 12:49

migraines every 2 weeks lasted 3 days. So painful. Gp prescribed Sumatriptan which worked to relieve but didn’t stop them. Saw a neurologist 18 months ago to eliminate any underlying problems. All ok. He prescribed propranolol (beta blocker) and I have had very few migraines since. I would like to taper off the propranolol soon to see if migraines return.

my niece has had a daith piercing in her ear to stop migraines and she swears it had worked.

BlondeFool · 20/11/2024 12:40

Do you get migraines on Fridays even if you haven't been at work all week?

ZZTopGuitarSolo · 20/11/2024 12:37

spiderlight · 19/11/2024 21:24

Excellent read, thank you.

NachoChip · 20/11/2024 00:40

Sorry if someone mentioned this and I've missed it but I know someone who got rid of migraines through eating meat only/no carb diet (keto diet?).
I really hope you find a solution OP

VegTrug · 20/11/2024 00:21

I get visual disturbances before a migraine and intense nausea. I'm on Ondansetron for nausea (life changing!!) and was on other meds for the migraines until I discovered putting my feet in hot water whenever I get any headache! It pulls your blood away from your upper extremities and results in almost instantaneous relief. Just amazing

rosalynd34 · 19/11/2024 23:22

Something else that helped, regarding posture and muscles, there are some youtube videos that were helpful.
This foam roller one in particular helps me so much but it is important to get a SOFT foam roller. They arent cheap but definitely worth it. For me its not a fix but it helps for sure and helps eliminate extra pain from muscles.

Horrace · 19/11/2024 21:51

So much advice and info to read through. I was working today whilst reading as much as I could. Will spend some time tomorrow going through properly and making notes following some research.

Thanku everyone.

OP posts:
Rlt8990 · 19/11/2024 21:41

userlotsanumbers · 19/11/2024 15:30

When was the last time you checked your working posture?

I have it bad when I have been bending my head forwards all the time away from its natural upright position (like, looking at a phone or laptop screen placed too low down, for instance) and in front of bright white/blue light (altered my apps to dark theme and got my glasses coated to reduce glare).

I also carry tension around my neck and upper back, so I am hunching my shoulders all the time (I have a sports massage to correct it and stretching exercises)

Once I cottoned on that this was part of the problem, things got a lot better - no alteration in meds needed. How are you sitting? Where is your screen? If you ask your body to relax and go floppy, which part is carrying the most tension? I still sometimes have problems if I don't realise that I have been clenching my jaw with tension, brings on a migraine that evening.

This! I have just posted but a gum shield at night to help jaw tension has massively helped me

Rlt8990 · 19/11/2024 21:40

I was similar, tried all the meds, different contraception, preventers, everything

I tried a gum shield from Amazon, really made a difference, got one made by my dentist so I know it won't affect my teeth in the long run

It's genuinely made such a difference, I have gone from near daily migraines to probably 2 or 3 a month. If I forget it or nap in the day I can feel that I have been grinding my teeth and feel the tension

It might be worth giving it a go with a cheap one to see if it helps you at all!

FishFlaked · 19/11/2024 21:29

Really helpful to know what works and what doesn’t for different people. I have HRT and take a beta blocker and it seems to be helping.

CandyRaining · 19/11/2024 21:07

CandyRaining · 19/11/2024 20:49

I haven’t read the full thread so sorry if this has already been mentioned but I’ve found that mine were related to deficiencies. I had similar migraines to you it sounds like, they were always on a Friday eve or Saturday morning, lasting three days and then making me feel like a zombie for a few days afterward, vomiting with it too. Anyway, someone on another mnet thread recommended a vitamin supplement called dolavont which is made specifically for treating migraines. I was sceptical at first but thought why not try it, I’d exhausted all other treatment. But they worked and now I have around one migraine every few months. Just before I started taking them I actually was diagnosed as having iron and b12 deficiency so as well as the dolavont I’m also on iron tablets and b12 injections. Not only have the migraines all but gone I feel a lot healthier in myself.
Another piece of advice I got from the same thread was to take aspirin at the start of a migraine attack. When having a rare migraine now I take anadin extra as it’s aspirin plus paracetamol and I take it with a fizzy drink as that also seems to help. It works a hundred times better than sumitriptan or any of the other migraine medications.

It’s called dolovent sorry. Expensive but worth its weight in gold for me.

CandyRaining · 19/11/2024 20:49

I haven’t read the full thread so sorry if this has already been mentioned but I’ve found that mine were related to deficiencies. I had similar migraines to you it sounds like, they were always on a Friday eve or Saturday morning, lasting three days and then making me feel like a zombie for a few days afterward, vomiting with it too. Anyway, someone on another mnet thread recommended a vitamin supplement called dolavont which is made specifically for treating migraines. I was sceptical at first but thought why not try it, I’d exhausted all other treatment. But they worked and now I have around one migraine every few months. Just before I started taking them I actually was diagnosed as having iron and b12 deficiency so as well as the dolavont I’m also on iron tablets and b12 injections. Not only have the migraines all but gone I feel a lot healthier in myself.
Another piece of advice I got from the same thread was to take aspirin at the start of a migraine attack. When having a rare migraine now I take anadin extra as it’s aspirin plus paracetamol and I take it with a fizzy drink as that also seems to help. It works a hundred times better than sumitriptan or any of the other migraine medications.

Krumblina · 19/11/2024 20:44

Riboflavin vitamin B2 400mg a day.
It's in the NICE guidelines but no one ever suggests it. Reduced my frequency hugely. Had no side effects.
I find orodispersible Rizatriptan the most effective when I have one. I take it on an empty stomach with caffeine. Then take and anti inflammatory after to help reduce rebound headaches- ibuprofen or naproxen.

This has all gone out the window currently as I'm breastfeeding and can't get any reassurance on what's safe to take.

Jezzballs2000 · 19/11/2024 20:34

Im on the new gegant- Rimegant/ Vydura. Is just been licensed for every other day and has made a massive difference. They will prescribe it after three other preventatives. Worth asking about (not all NHS trusts will prescribe).

LoremIpsumCici · 19/11/2024 20:30

I take candesartan (sp?) per the neurologist. I have asthma so some migraine medications are off limits.

You could consider working Mon/Tues and Thursday/Friday as I find that if I over do things, I trigger a migraine. I tend to get two a week, but sometimes I am able to shorten them by noting when I am feeling low energy and a bit brain foggy that I need to stop and rest. Perhaps you are pushing yourself too hard?

I don’t think it is coincidence that working 5 days in a row then causes a 3 day migraine. Having a day of rest in the middle might work better, even if you have to work 10hr days instead of 8hr days so you are still full time.

LoremIpsumCici · 19/11/2024 20:24

Hopefully your GP has flagged this already, new regulations are that women 55years and under have to be on highly effective contraception to take topiramate

I was just on this and my DH having had a vasectomy was acceptable?

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